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The “Father of OpenNotes” Shares His Perspectives on the Movement’s Forward March

July 26, 2016
by Mark Hagland
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Dr. Delbanco shares his perspectives on where OpenNotes is now—and on where it’s headed

The OpenNotes movement, in which physicians and patient care organizations are sharing physician notes with patients following their doctor visits, is gaining steam all across the U.S. healthcare system. Already now, the OpenNotes team estimates, 10 million patients have access to their physicians’ notes online. OpenNotes—and its potential to change the physician-patient relationship, and ultimately contribute to the transformation of healthcare delivery in the U.S., to make it more responsive and to better engage patients in their care—was the subject of the July/August Healthcare Informatics cover story.

Naturally, every movement needs an early, visionary leader, and the OpenNotes movement has been no exception—it’s got Tom Delbanco, M.D. Delbanco is a professor of general medicine and primary care at Harvard Medical School, and practiced as an internal medicine physician for 40 years in the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center in Boston. Several years ago, he joined together with Jan Walker, R.N. to initiate a movement that is now sweeping the country, changing healthcare, and creating numerous implications for healthcare IT leaders in its wake.

Dr. Delbanco was one of a number of physician leaders and others to interviewed for the July/August HCI cover story. He spoke this summer with Editor-in-Chief Mark Hagland. Below are excerpts from that interview.

To begin with, it is interesting that OpenNotes has a very light “footprint,” correct? You have very little heavy organizational structure or formality of any kind.

Yes, that’s correct. OpenNotes really is a movement; it’s not a piece of software or a hierarchical organization. The only thing that is ours is our logo, our name and our intellectual property on our website—our toolkits, our videos, our research—all of which we charge nothing for. We have no revenue stream other than philanthropy. And we have an agreement now with CHIME and AMDIS [the Ann Arbor, Mich.-based College of Healthcare Information Management executives, and the Association of Medical Directors of Information Systems].


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So tell me about what made you decide to start OpenNotes.

I can see things over a long period of time. And there’s no question that when I went to medical school—and I had a good Jewish mother—that my mother thought I would be a god, and would tell people what to do. I don’t think the modern doctor thinks in quite those terms, though perhaps some do more so than people would admit. But here is the epiphany I had, as a general internist, who had started the division of primary care at Beth Israel [Medical Center].

It was in the 1970s, and I had a new patient whose complaint was high blood pressure. He was a young man, and I learned that his marriage wasn’t going well, that he was in some trouble at work—he was a printer by trade—and that he smoked. We had started to create problem lists in the medical record, which was still paper-based back then. And I was writing notes, but I said to myself, this guy is a printer, he can probably read upside-down what I’m writing about him right now. So I said to him, ‘Mr. A., you know, I’m stuck, because I think you can see what I’m writing, right?’ And he said ‘Yes.’ And I said, ‘So the problem is that your case is a classic one of early alcohol abuse, but I don’t want to write that down if it’s not true.’ And he paused, and then said, ‘Well, you’d better right it down.’

At around the same time, there was an article in The New England Journal of Medicine saying, why shouldn’t patients see their medical records? So I began giving patients copies of medical records I wrote. And then the electronic medical record came along, and Beth Israel was one of the first to have an EMR, and one of the first to have a patient web portal, now called PatientSite. And so we got used to the notion that patients could look at their problem lists and medication lists and message their doctors. But the one thing they couldn’t do was look at our notes.

And then in 1996, HIPAA [the Health Insurance Portability and Accountability Act] came along and gave patients the right to read anything in their record. But we as doctors made it as difficult as possible, charging 75 cents a page or requiring that a nurse be present, or stalling. So all we’ve really done with OpenNotes has been to give patients access to something that they have a right to do anyway. It’s about transparency; it’s part of the inexorable motion of transparency as it [transparency] takes over the world.

From what I’ve heard from physician and medical informaticist leaders, the main challenge in moving organizations, and practicing physicians, towards OpenNotes, is cultural, not technological, correct?

Yes, that’s right. We learned a lot from our first study, published in the Annals of Internal Medicine in 2012. First, as doctors shifted to OpenNotes, they found that they had no need to be afraid of the change. To this date, we [at OpenNotes] know of only four doctors nationwide who opened their notes and have since closed them. Importantly, 70 percent of patients have said they’ve felt more in control of their care. What’s more, I think that OpenNotes fosters control both for patients and for those caring for them. And one of the biggest conundrums in medicine is how you get patients to be compliant. And when 70 percent of patients said they were taking their medicines better because of this, that was a mind-blowing stat, and an enormous contribution that we were able to document. That was very exciting!

So there are multiple dimensions of benefits, then, right?

Yes. One of the biggest concerns now is the issue of value, which is a combination of cost and quality of care. We believe that this [the advance of the OpenNotes movement] will enhance value; and it will enhance patient safety as well, and that’s very important. Sigall Bell, who does most of our research into patient safety, points out that a doctor writes and reads thousands of notes, but a patient reads only his own. Having the patient’s eyes on one record can help catch errors, ensure the record is accurate, and help make care safer.

The key has been to get the doctors not to freak out ahead of time, right?

Yes, that’s right. So then, what do you need to make this happen? You need a physician champion. You need education. In that regard, our toolkits have been downloaded thousands of times, and people have said they were very helpful. And when Kaiser Northwest adopted OpenNotes, they had an interesting business rationale. They said, number one, we can manage the health of our patients belter if they use our portal; number two, once patients are on one patient portal, they don’t want to switch and are more likely to remain in our system; and number three, one of the best ways to encourage them to register for our portal is to offer them OpenNotes.

How fast will this movement accelerate?

We have generous funding from four large philanthropies, which we received nine months ago now. We obtained three years of funding, and our goal was to go from 20,000 patients in our original study to 50 million Americans with ready electronic access to their doctors’ notes. We published our paper in October 2012, and almost four years later, more than eight million people have such access now. I don’t know if we’ll make 50 million, but our basic goal is to make this the standard of care. That’s our real goal.

As more and more communities go to this, it becomes the norm, right? Doctors all talk to each other, and adoption will lead to more acceptance.

So, Diane Rehm interviewed me on her show. She wanted to find a doctor to debate me, but she couldn’t find a doctor who would come out publicly and oppose this idea. On the other hand, when you do anonymous polls, a hell of a lot of them [practicing physicians] say they don’t like this a bit. I have theories about that. One of the interesting questions is why is there so little perturbation of the doctor as a result of OpenNotes. We spent untold hours preparing our three sites for the ‘deluge’—and nothing happened.

We think that there are several reasons that patients don’t bother their doctors once their notes are opened to them. One is that for every patient who bugs the doctor more, there’s another patient who bugs the doctor less; that’s a tradeoff. Number two is that patients are far more resourceful than we give them credit for. If I write a technical term, they look it up. The third thing is, if it’s a very small notation error, like it was an aunt instead of an uncle who had cancer, they don’t bother us. Fourth, it’s still hard to find the notes in many of the portals. The fifth reason, which I don’t like, is that patients are still scared stiff of doctors. Even for me, my pulse goes up when I see the doctor. And one of the things we’re studying now is anonymous reporting of patient safety aspects. We’re looking at Beth Israel and Children’s Hospital of Boston and Carolinas Health System.

Meanwhile, there are perhaps four principal reasons that doctors don’t like the idea of OpenNotes, two of which are explicit. One is that they are understandably terrified of what it will do to their workflow, which is a legitimate fear. But in fact, post-go-live, we find very little change to doctors’ workflow. The second is that they say we’re going to scare the hell out of our patients. But that rarely happens. And the third thing is, because of RVUs and the persistent primarily fee for service payment system, doctors don’t always record what’s actually right. So you read a note saying, I spent 40 minutes with Mark, we went through ten issues. And you, Mark, might say to yourself, wait a minute, he spent four minutes with me and never touched me. So OpenNotes will breed honest transparency. And finally, some doctors are literally embarrassed by the notes they write. Some don’t write very well. For some, English is their second language.

How do you feel about the phenomenon at this point in its evolution? You’re its father.

I’m excited about understanding how OpenNotes will affect patients, families, care partners, clinicians and medical systems. I’m also excited about an extension of OpenNotes called OurNotes, in which patients will co-generate notes with us. We believe that will lead to better shared decision-making and shared care planning.

We’re learning that OpenNotes can build trust between patients and clinicians, and it’s exciting to think about what else we’ll learn about the power of note sharing in all areas of health care, including behavioral health.

That’s a frontier.

Yes, it’s a real frontier, and it’s spreading. The University of Washington, Virginia Mason, Beth Israel, and the U.S. Department of Veterans Affairs, are all working hard on opening mental health notes. I also think for substance abuse, that it has enormous implications. Our pain unit is doing some exciting work with note sharing. That’s another frontier. There are many others. It’s a terrific area for inquiry, and we are thrilled about the growing interest nationally and internationally.


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Allscripts Sells its Netsmart Stake to GI Partners, TA Associates

December 10, 2018
by Rajiv Leventhal, Managing Editor
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Just a few months after Allscripts said it would be selling its majority stake in Netsmart, the health IT company announced today that private equity firm GI Partners, along with TA Associates, will be acquiring the stake held in Netsmart.

In 2016 Allscripts acquired Kansas City-based Netsmart for $950 million in a joint venture with middle-market private equity firm GI Partners, with Allscripts controlling 51 percent of the company. With that deal, Allscripts contributed its homecare business to Netsmart, in exchange for the largest ownership stake in the company which has now become the largest technology company exclusively dedicated to behavioral health, human services and post-acute care, officials have noted.

Now, this transaction represents an additional investment for GI Partners over its initial stake acquired in April 2016, and results in majority ownership of Netsmart by GI Partners.

According to reports, it is expected that this sale transaction will yield Allscripts net after-tax proceeds of approximately $525 million or approximately $3 per fully diluted share.

Founded 50 years ago, Netsmart is a provider of software and technology solutions designed especially for the health and human services and post-acute sectors, enabling mission-critical clinical and business processes including electronic health records (EHRs), population health, billing, analytics and health information exchange, its officials say.

According to the company’s executives, “Since GI Partners' investment in 2016, Netsmart has experienced considerable growth through product innovation and multiple strategic acquisitions. During this time, Netsmart launched myUnity, [a] multi-tenant SaaS platform serving the entire post-acute care continuum, and successfully completed strategic acquisitions in human services and post-acute care technology. Over the same period, Netsmart has added 150,000 users and over 5,000 organizations to its platform.”

On the 2018 Healthcare Informatics 100, a list of the top 100 health IT vendors in the U.S. by revenue, Allscripts ranked 10th with a self-reported health IT revenue of $1.8 billion. Netsmart, meanwhile, ranked 44th with a self-reported revenue of $319 million.

According to reports, Allscripts plans to use the net after-tax proceeds to repay long-term debt, invest in other growing areas of its business, and to opportunistically repurchase its outstanding common stock.

The transaction is expected to be completed this month.

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Study Links Stress from Using EHRs to Physician Burnout

December 7, 2018
by Heather Landi, Associate Editor
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More than a third of primary care physicians reported all three measures of EHR-related stress
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Physician burnout continues to be a significant issue in the healthcare and healthcare IT industries, and at the same time, electronic health records (EHRs) are consistently cited as a top burnout factor for physicians.

A commonly referenced study published in the Annals of Internal Medicine in 2016 found that for every hour physicians provide direct clinical face time to patients, nearly two additional hours are spent on EHR and desk work within the clinic day.

Findings from a new study published this week in the Journal of the American Medical Informatics Association indicates that stress from using EHRs is associated with burnout, particularly for primary care doctors, such as pediatricians, family medicine physicians and general internists.

Common causes of EHR-related stress include too little time for documentation, time spent at home managing records and EHR user interfaces that are not intuitive to the physicians who use them, according to the study, based on responses from 4,200 practicing physicians.

“You don't want your doctor to be burned out or frustrated by the technology that stands between you and them,” Rebekah Gardner, M.D., an associate professor of medicine at Brown University's Warren Alpert Medical School, and lead author of the study, said in a statement. “In this paper, we show that EHR stress is associated with burnout, even after controlling for a lot of different demographic and practice characteristics. Quantitatively, physicians who have identified these stressors are more likely to be burned out than physicians who haven't."

The Rhode Island Department of Health surveys practicing physicians in Rhode Island every two years about how they use health information technology, as part of a legislative mandate to publicly report health care quality data. In 2017, the research team included questions about health information technology-related stress and specifically EHR-related stress.

Of the almost 4,200 practicing physicians in the state, 43 percent responded, and the respondents were representative of the overall population. Almost all of the doctors used EHRs (91 percent) and of these, 70 percent reported at least one measure of EHR-related stress.

Measures included agreeing that EHRs add to the frustration of their day, spending moderate to excessive amounts of time on EHRs while they were at home and reporting insufficient time for documentation while at work.

Many prior studies have looked into the factors that contribute to burnout in health care, Gardner said. Besides health information technology, these factors include chaotic work environments, productivity pressures, lack of autonomy and a misalignment between the doctors' values and the values they perceive the leaders of their organizations hold.

Prior research has shown that patients of burned-out physicians experience more errors and unnecessary tests, said Gardner, who also is a senior medical scientist at Healthcentric Advisors.

In this latest study, researchers found that doctors with insufficient time for documentation while at work had 2.8 times the odds of burnout symptoms compared to doctors without that pressure. The other two measures had roughly twice the odds of burnout symptoms.

The researchers also found that EHR-related stress is dependent on the physician's specialty.

More than a third of primary care physicians reported all three measures of EHR-related stress -- including general internists (39.5 percent), family medicine physicians (37 percent) and pediatricians (33.6 percent). Many dermatologists (36.4 percent) also reported all three measures of EHR-related stress.

On the other hand, less than 10 percent of anesthesiologists, radiologists and hospital medicine specialists reported all three measures of EHR-related stress.

While family medicine physicians (35.7 percent) and dermatologists (34.6 percent) reported the highest levels of burnout, in keeping with their high levels of EHR-related stress, hospital medicine specialists came in third at 30.8 percent. Gardner suspects that other factors, such as a chaotic work environment, contribute to their rates of burnout.

"To me, it's a signal to health care organizations that if they're going to 'fix' burnout, one solution is not going to work for all physicians in their organization," Gardner said. "They need to look at the physicians by specialty and make sure that if they are looking for a technology-related solution, then that's really the problem in their group."

However, for those doctors who do have a lot of EHR-related stress, health care administrators could work to streamline the documentation expectations or adopt policies where work-related email and EHR access is discouraged during vacation, Gardner said.

Making the user interface for EHRs more intuitive could address some stress, Gardner noted; however, when the research team analyzed the results by the three most common EHR systems in the state, none of them were associated with increased burnout.

Earlier research found that using medical scribes was associated with lower rates of burnout, but this study did not confirm that association. In the paper, the study authors suggest that perhaps medical scribes address the burden of documentation, but not other time-consuming EHR tasks such as inbox management.


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HHS Studying Modernization of Indian Health Services’ IT Platform

November 29, 2018
by David Raths, Contributing Editor
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Options include updating the Resource and Patient Management System technology stack or acquiring commercial solutions

With so much focus on the modernization of health IT systems at the Veteran’s Administration and Department of Defense, there has been less attention paid to decisions that have to be made about IT systems in the Indian Health Service. But now the HHS Office of the Chief Technology Officer has funded a one-year project to study IHS’ options.

The study will explore options for modernizing IHS’ solutions, either by updating the Resource and Patient Management System (RPMS) technology stack, acquiring commercial off-the-shelf (COTS) solutions, or a combination of the two. One of the people involved in the analysis is Theresa Cullen, M.D., M.S., associate director of global health informatics at the Regenstrief Institute. Perhaps no one has more experience or a better perspective on RPMS than Dr. Cullen, who served as the CIO for Indian Health Service and as the Chief Medical Information Officer for the Veterans Health Administration

During a webinar put on by the Open Source Electronic Health Record Alliance (OSEHERA), Dr. Cullen described the scope of the project. “The goal is to look at the current state of RPMS EHR and other components with an eye to modernization. Can it be modernized to meet the near term and future needs of communities served by IHS? We are engaged with tribally operated and urban sites. Whatever decisions or recommendations are made will include their voice.”

The size and complexity of the IHS highlights the importance of the technology decision. It provides direct and purchased care to American Indian and Alaska Native people (2.2 million lives) from 573 federally recognized tribes in 37 states. Its budget was $5.5 billion for fiscal 2018 appropriations, plus third-party collections of $1.02 billion at IHS sites in fiscal 2017. The IHS also faces considerable cost constraints, Dr. Cullen noted, adding that by comparison that the VA’s population is four times greater but its budget is 15 times greater.

RPMS, created in 1984, is in use at all of IHS’ federally operated facilities, as well as most tribally operated and urban Indian health programs. It has more than 100 components, including clinical, practice management and administrative applications.


Driving Success at Regional Health: Approaches and Challenges to Optimizing and Utilizing Real-Time Support

Regional Health knew providing leading EHR technology was not the only factor to be considered when looking to achieve successful adoption, clinician and patient satisfaction, and ultimately value...

About 20 to 30 percent of RPMS code originates in the VA’s VistA. Many VA applications (Laboratory, Pharmacy) have been extensively modified to meet IHS requirements. But Dr. Cullen mentioned that IHS has developed numerous applications independently of VA to address IHS-specific mission and business needs (child health, public/population health, revenue cycle).

Because the VA announced in 2017 it would sundown VistA and transition to Cerner, the assessment team is working under the assumption that the IHS has only about 10 years to figure out what it will do about the parts of RPMS that still derive from VistA. And RPMS, like VistA, resides in an architecture that is growing outdated.

The committee is setting up a community of practice to allow stakeholders to share technology needs, best practices and ways forward. One question is how to define modernization and how IHS can get there. The idea is to assess the potential for the existing capabilities developed for the needs of Indian country over the past few decades to be brought into a modern technology architecture. The technology assessment limited to RPMS, Dr. Cullen noted. “We are not looking at COTS [commercial off the shelf] products or open source. We are assessing the potential for existing capabilities to be brought into “a modern technology architecture.”

Part of the webinar involved asking attendees for their ideas for what a modernized technology stack for RPMS would look like, what development and transitional challenges could be expected, and any comparable efforts that could inform the work of the technical assessment team.




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